Lots of organisations don’t fully realise what using lived experience in service design and provision can do for an organisation, but Southdown does. It’s a breath of fresh air.

“I’ve been allowed to express my voice”

It was first suggested I had autism when I was seven. I was diagnosed when I was nine. My initial reaction was that it just made sense to me.

Labels are diverse and contain lots of different meanings. It doesn’t have to define everything I do, but it is who I am, and it is part of my neurological wiring.

Originally I was diagnosed with Asperger’s Syndrome but since joining autism support groups, I made the conscious decision to say I’m an autistic person so as not to create a separation.

I first heard about Southdown when their Community Links Advisor came to the autism support group I go to. I went to the support group when a friendship broke down and because I felt there were things I wanted to develop.

I started working in the kitchen of a care home about a year before, but I was having real trouble with the work process. The autism support group referred me to the Community Links service for support around finding new work and for help around organising awareness talks on autism.

I’ve been allowed to express my voice which is huge – there is a slogan in disability rights – ‘Nothing about us, without us’. And I think Southdown very much represents this ethos. Being able to have open dialogue and share experiences is constructive and empowering.

Southdown is absolutely fantastic. They asked me what I wanted to achieve, what I felt comfortable doing. My Community Links Advisor and I met every one to two weeks to create an action plan. Having a routine in place really helped. There was flexibility in the action plan and over the ten sessions we built on this.

My advisor connected me with the People in Partnership service and when I said I wanted support in my work, she organised training around autism for my colleagues.

Since then, I’ve given awareness talks for Southdown’s student buddy courses, for the employment charity People Matter, and at meetings with Autism Sussex.

I wanted to talk to workplaces and schools to try and address what we struggle with, our strengths, and what needs to be different in the employment process.

Only 32% of autistic adults have some kind of paid work and 16% of those have full-time paid work. Only 6% of autistic adults are able to sustain work.

When I was at my autism support group I could see there were common issues that autistic people wanted addressed relating to work.

One of the issues is that the language you encounter going through the application and interview process is challenging for someone with autism and it can lose you a position right off the bat.

Then there’s the issue of whether to declare your autism as that could create a bias against you. Do you tell employers so you can get the support straight away or do you get into work and then struggle?

There’s also the challenge of not telling people at work and risking a meltdown and people thinking you’re just being violent or having a tantrum.

That’s why sustainability at work for autistic people is so low – not only are you dealing with language issues, mental exhaustion after work, and dealing with sensory overload, you’re also dealing with societal issues where people are not able to give you the support you need.

Statistically autistic people tend to excel in the creative or analytic fields but the jobs offered to them at jobcentres are in offices, kitchens, and retail. I think a lot of autistic people would generally struggle in these jobs without adaptation.

Sometimes there’s too much sensory stimuli or something didn’t go the way they thought it would, or people around them don’t know how to react.

There is a difference between sensory overload and sensory meltdown. Sensory overload is when there is so much going on that you can’t think straight – you find it difficult to communicate and you can go blank. Your thought process is disjointed.

It can lead to a sensory meltdown but not always. When you’ve taken in too much info, your understanding of a situation breaks down and it’s like a cry for help and it’s passed the point of control. You’ve lost understanding and meaning and everything collapses. It’s distressing to say the least because you either cry out or lash out defensively.

The best way to avoid a sensory meltdown is to try and prevent it from happening in the first place – using coping mechanisms to calm down or escape the situation.

Other things that help can be ‘stimming’ – self-stimulating behaviours like clicking fingers, clicking the mouth, or making more noise. A lot of autistic people say stimming helps to calm them, helps them focus. It is an anchor. It should only be discouraged if it’s self-harming or causing the person to shut out the world.

It’s not a bad thing to be autistic. We have lots of strengths – original thinking, multi-dimensional thinking, and systemising ability. And we possess a wealth of information on our specialist subjects. My interests are sci-fi, fantasy, etymology, psychology, human behaviours, and military history. I had a stage where I wanted to write a vampire story set in high-mediaeval Transylvania!

When I talk to the student buddies I inform them what autism is, what behaviours and strengths we have, what coping mechanisms there are, and what support there is.

In other talks I try and show that we need to keep support work going – I’ve participated at an Autism Sussex board meeting where I talked about the vital importance of support groups and why they shouldn’t be cut.

The joy of an autistic support group is you have somewhere where you’re surrounded by autistic people. That makes a huge difference. I’ve easily met over 100 people with autism now.

Suddenly you can start having the conversations you want to have; you start connecting with people, making friends, and they’re empowering you. Support groups energise me and make me feel I can take on the world!

I still have frustrations where I feel behind and like I still don’t understand things, but I no longer feel isolated. At my support group, I see people’s confidence increase and they are having open dialogues of conversation about things they wouldn’t ordinarily be able to talk about.

Sensory difficulties can make you feel isolated and your only contact is online. Mental health disorders are so much higher in the autistic population compared to the neuro-typical population and suicidal ideation is ten times higher in autistic people.

Our experiences are often diminished.

Schooling still needs a lot more support put into it. So many autistic people really struggle in secondary school. It really took a toll on my self-confidence. It was like coming against a brick wall. I missed a lot of school, my grades suffered, and I was playing catch-up. I found it difficult to make friends too.

College was hard because I didn’t know how to ask for help or what to ask for. They’d give me instructions which I couldn’t properly process, and then I’d struggle to catch up.

I think I could have worked better in the past had I had more self-knowledge. I had a five year unemployment gap after college but I’ve been in my current job for three years part-time. I’ve finally got to a place where I know that if I jumped into a full-time job I wouldn’t cope.

Frequently the struggles that we go through are invisible and that’s something to be very mindful of. Being mindful of sensory difficulties is also important as is not forcing people into uncomfortable situations.

From my own angle, self-love has helped me and something I’ve cultivated. The same with self-identity and having an incredibly supportive mother and girlfriend. Meditation and exercise helps me be more proactive and regulate emotion. I’ve learnt some very good life lessons and researched people’s lived experiences and conditions so I can interact in society and empower people.

It’s incredibly important to have support. It’s boosted my confidence and it’s given me the right part in the machine. It’s helped me feel better about myself and helped me develop at a comfortable pace where I’m not mentally exhausted in the process. It’s set me on a new path.

Southdown has been a great form of support – it’s absolutely fantastic. They’re constantly trying to involve me in things and my experience is respected.

There’s distaste in the autistic community about being used as a prop or as not a real part of a process, but I’ve been given very open reign at Southdown. They saw I was passionate about what I was doing.

I’ve just completed the Peer Mentoring Course with the People in Partnership service, I’ve been a Student Buddy, and I’ve given eight awareness talks. Soon I’ll be referred to the Employment Specialist team.

At the Peer Mentoring Course, everybody listens, everybody’s open. It creates a beautiful community and belonging and truthful dialogue.

I feel there is a wonderful effort by People in Partnership to understand me – and that gets the best out of me. Having people who are receptive, understanding, and who try to help daily struggles makes such a difference – you see a real change and blooming of a person.

Lots of organisations don’t fully realise what using lived experience in service design and provision can do for an organisation, but Southdown does. It’s a breath of fresh air.

Often I feel like I’m stepping outside into a world where people haven’t woken up yet but Southdown and the autism support group are two places where I can have truthful conversation. It’s like coming home.

Inclusivity and acceptance of autism is what autistic people want.

People in Partnership work with people affected by, and interested in, mental health to improve mental health and wellbeing services across East Sussex.

East Sussex Community Links offers individually tailored coaching for people with mental health needs and autistic people with mental health needs.  It is a solution focused service, offering coaching to enable people to take part in community activities.  This service will evolve into our Community Connectors service from 1st April 2018, which will offer a social prescribing service across East Sussex.